Migraine

first of all hi everybody, im new here

i was put on topamax 3 weeks ago. the plan was to increase to 100mg (25mg/week), however i started having serious side effects on 50mg (2nd week) so went back down to 25mg called the doc - nurse said to split my doses up, one in morning one at night to see if that helped. im suppose to do that on saturday but i just left them another msg because i seem to be having alot of side effects. i was just wondering if anyone else experienced this many or just me? ive had major anxiety issues, menstrual problems, nausea, gum inflammation, mood swings, memory/word loss, hair loss, tingling, weakness, problems driving.....at this point i think id rather live with migraines (which i have almost everyday) and the other meds im on than take topamax. thanx in advance ~nikki~

Hi Nikki!

Welcome to the forum! Sorry to hear you had so many side effects, and so quickly too!

Most of the time, when titrating on topamax, it is taken p.m. to start then split into a.m and p.m. dosing. From what you are saying, you started at 25mgs in the evening the went to 50mgs also in the evening only? For your own reference see this article here.

If you had that many side effects, I would see what other options there were - since there are over 100 preventive medications being used for migraine, I would see what else your doctor suggests. I mean if you want to try the split dosing first and see if that works better....

I had issues when I first started...cognative, menstrual, tingles, cramping in my calf on higher dosing....but that went away once I was on it for a while.

I would be concerned more about the mood swings, hair loss and driving.

Definatly follow up with your doctor. Maybe print out the list of the other medications used for migraine. Remember - it's not your doctor who has to be o.k. with this - it's YOU. It's your health, not theirs. You need to be o.k. with the side effects and what you can and cannot live with.

Please keep us posted. If you have any other questions or concerns, feel free to let us know! We are here for you!

Welcome again!

Topamax was a total bust for me. Made my head worse, and I felt horrible the entire time. But it's a fabulous drug for some people, including many on this forum.

Be emphatic when your doctor's office calls you back.

Are you seeing any improvement in your head?

Remember, Topamax isn't the only drug out there. After my Topamax experience, I've settled on Lamictal, another anticonvulsant. I saw a specialist last month, and she's added Lyrica, and we're changing one of my antidepressants from Effexor to Celexa.

Hang in there!

Gretchen in Mississippi

That's the thing, I've been trying to stick it out because I have noticed a difference in my head and it makes me not want to smoke ciggs. But to tell you the truth I'm scared to try and increase my dose again. Because if I was like that on 50mg, what happens at 75 or 100? I'll be in a mental ward for sure! You are correct I took 25mg for 1 week at night and went to 50 mg at night 2nd week. On the 6th night of the 2nd week I started having a panic attack (I've only had one in my life {I'm 30} and that was 6 yrs ago). Yesterday was the first day I went out of the house somewhere since then (grocery shopping) and started having another panic attack in the check out line because they were so busy!!! That's just ridiculous to me. My anxiety & moods are a definite issue and when I'm not feeling like I need to calm myself down I just feel sick or worn out you know? I'm definetely concerned about the hair loss since I've already been losing hair for a while and don't know why lol. Now I'm seeing it disappear in the front of my head which is exteremly fast acting to me and I dont like it.....I think I will have to get off of it.

Thanks for the link to that article I've already actually read it. When I was freaking out one day (before I realized what was actually going on with my body) I came across that and thought I was taking my meds wrong which is actually why I called the doc in the first place. I took 50mg at night and thought I was suppose to be taking one in the am and one in the pm. Nurse said either way was fine and didnt really seem to care as usual.

Thanks for your replies! I will definetely keep you posted
Sorry I wrote a book, it's just exciting for me to actually have someone to talk to who understands about this stuff.

Hello, Nikki, welcome to the forum.

Only you can decide what side effects you can tolerate. Topamax has been a miracle drug for many people, while others can not tolerate it at all. I was on it less than a week because it caused me such severe insomnia. I hope you've seen by now that there are plenty of other options, although I'm sure you are reluctant to give up a med that seems to be helping your migraines. But another drug might help even more.

Good luck with this. Keep us posted on your progress.

That is yet another side effect I've experienced lol, but I'm also on a muscle relaxer that has helped me fall asleep lil bit. I'm looking into all the new prevenitive meds now, hopefully I can find something....

Look over the link I gave you up in the first reply - it gives you all the medications currently being used for preventive treatment of migraines.

I think a lot of doctors go to Topamax first because it's one of only 4 I think that are actually labled for migraine prevention. All the others are off scripted (I'm not sure of the exact terminology) but, just like topamax was originally just for seizures, now look! So doctors tend to go with that first, in my opinion.

Just remember you need to be ok with what you are taking - don't let the doctor talk you into staying on it if you really are not comfortable on it. And if it was really helping your migraines, maybe another drug in the same family would do the same with less side effects for you. There are a few people out there that had bad side effects with Topamax, but tried Zonegran and did great on that.

It's worth looking into and knowing your options. Being a well informed patient is your best weapon against this disease!

Please keep us posted.....did you already set a new doctor appointment?

I was checking out that list last night. Honestly, I did not know there were that many meds used for migraines. I actually was on Zonegran a while back then lost my insurance so had to stop taking it (way too expensive w/out insurance). So I was very limited on my meds for a couple years. Anyway Zonegran worked for me in the begining then seemed to change a bit, probably because I was on it for so long. I had no side effects with Zonegran. I'm also on a low dose anti-depressant and muscle relaxer too (at night) so I'm not sure what you can and can't mix with those you know? They all say your not suppose to take them together but I've noticed alot of docs prescribe them together. I'm assuming since they're all low doses...idk I'm not a doctor lol

I don't have a new appt yet, still waiting for a call back. They should be calling shortly but if not I'll be calling them again cause I need to change something quick. My new thing last few days is I just feel really sick when I wake up.

Nikki,

I hope you are talking to your doctor about all of this. The side effects are different for each of us, however, since Topamax is so highly advertised and promoted, along with the fact that it is approved for migraine prevention, makes it very common. In addition, it is a very helpful drug for many many people.

Unfortunately, I was unable to continue with Topamax due to the side effects. I actually made it for about 8 monhts, but by month 5, I was starting to really notice the problems. I knew I was having side effects, but my migraines were better, so I decided I was just going to put up with the problems and continue taking Topamax. My personal case, I suffered from severe anxiety, crying spells, severe weight loss, hair loss, and couldn't concentrate long enough to even cook dinner.

In the end, I felt like I lost my mind. Then, I knew I had to get off it. Know you are not alone. Know there are many people who get panic attacks, severe anxiety, depression, insomnia, weight loss, loss of concentration, hair loss etc, etc as side effects. I have been off of Topamax since September,and I am still losing hair. However, the volume of hair loss has started to slow down.

Good luck with the next preventative.

Nancy W

Nancy - how long did it take before you started noticing hair loss?? Just curious cause it was a couple weeks for me and I'm praying I don't lose alot more...

Just spoke with nurse, doc said to stop taking it thank God!! I can't wait to feel normal again! Well normal to me anyway he's not giving me a new med to replace it yet, keeping my appt feb 18th it should all be out of my system by then and I'll probably get something then. I am sad this didn't work out for me since it was helping my migraines a great deal but I now know there's lots of other meds out there and hopefully one is right for me

I'm taking Topamax for the second time around. I had a lot of side effects before and I'm having a lot now. But already I'm out of this mild status migrainous that I was in and I haven't had but some mild cluster headache problems for the last two weeks.

*sigh* I've started losing weight...but hair too. I've got long hair and it's long coming out. It'll be a while before anyone can tell any is missing.

I've got really mixed feelings about Topamax. It has been a Godsend in migraine prevention for me. But dealing with the side effects becomes a full-time job in itself.

I don't know the final answer.

That's why I tried to stick it out because it helped me in the migraine dept. alot. but when I realized the side effects I was having at just 25mg, didn't think I could deal. Now I've been having heart palpatations today, I don't know what that's about. Hopefully that goes away since I won't be taking it tonight. You're 100% correct when you say dealing with the side effects is a full time job in itself! For us anyway Wish you the best

You too, hun.

The side effects do diminish. Once they go down, keeping up with potassium and keeping myself cool are the biggest things I have to do.

Don't give up yet. If 25mg helps you, YIPPEEE! Stick it out because it might be worth the side effects.

You might consider giving Gatorade a try. It keeps me hydrated, helps with my potassium, and keeps me cooler.

We're in this together and we'll make it.

I have experienced hair loss too. My doctor said that I was the only one who noticed hair loss, but I knew it was from Topamax. I took it once before and I was losing my hair then too. Nothing serious, but noticable. I have had other issues with Topamax as well, concentration/memory, tingling everywhere. And on top of it, it did not help my migraine one bit.

Side effects diminish in SOME people. Not all. From my experience & other people's antictdotes, it sounds like those of us who have a complex history: basilar & hemiplegic migraines, sleep disorder issues, history of ADHD or other developmental disorder, etc. end up in a terrible bind & with more & more lasting effects. However, it seems like folks who are less complicated (classic or common migraines, who want to lose weight), somehow get a grip & their side effect often (not always) decrease.

I tried every trick... since all that advice, I still do them even though I stopped Topamax 9 months ago...drank lots of flavored water, Vitamin water, V-8 juice, bananas (not a trigger for me), took suppliments, took vitamins, magnesium and... it all did very little!
The severe pain I had from the stiffening & clenching muscles episodes did decrease somewhat when i did all of that plus meditation strategies, but I still get the parasthesias, seizure like symptoms & increased tinnitus that I got when on Topamax. My sleep problems got worse, my basilar migraines got worse, but my daily migraines got better, go figure. Plus, i ended up developing breathing problems, and I wouldn't be surprised if Topamax caused or at least worsened my tendency to have asthma and sleep apnea.

If the interventions don't help & if things don't change in the upcoming weeks (keep in mind that it often takes 2 months before things "settle", although I still wasn't "settled" 4 1/2 months later), listen to your body & if you are able to communicate well with your doctor, that's a plus. If not, find another neurologist.
I wish I had known to fire my previous neurologist sorry hiney sooner!